Today is Rare Disease Day. It may just be another day for you, but today is a very special day for my family.
My mom was diagnosed with a rare disease in 1987. It’s called Behcet’s Disease. I was only seven years old when I was told about her diagnosis. I can still put myself back on the staircase sitting next to my nine-year old brother when given the news. I can remember those feelings of fear, uncertainty, and sadness. It was difficult to comprehend at that age because she looked fine to me. I didn’t notice anything different.
Behcet’s Disease is an autoimmune disease. It effects the blood vessels of the whole body which then affects the central nervous system, gastrointestinal and mucus membranes. It causes incredible pain, ulcerations, severe migraines and skin lesions.
When a person with Bechet’s is in a flare up, their immune system is in overdrive. The only thing that will help calm it down is being on an immunosuppressive drug. If you know anything about medicine, you know that your body can’t stay on steroids. It has horrific side effects and is intended for short-term use only.
There is no cure but there are several different treatments that patients can try. Every person is an individual and their bodies react different to both the disease and the medicine.
Unfortunately, my mom really hasn’t had a lot of luck with treatments. She has had to change the way she lives to decrease the amount of stress (which can easily bring on a flare up). She had to stop working years ago, find support in family and friends and basically learn to tolerate pain. She is a guinea pig when it comes to trying a new medication. She has tried anything and everything that is approved from the FDA. The only thing that she refuses to take is pain medication, such as a narcotic. She will just take over the counter ibuprofen or Tylenol.
My mom isn’t a complainer, in fact you wouldn’t even think anything was wrong with her because she doesn’t talk about it. She is one of the most selfless people I have ever met. She goes on with her life putting everyone before herself. I think that this may be a coping mechanism. When she is surrounded by her loving family, friends and furry babies she is able to forget the pain. She has a great sense of humor, adores her grandkids and loves to travel. She is a true inspiration. She doesn’t let the disease stop her from living her life. It throws a wrench in it, but she stays optimistic and just keeps moving forward. I am so proud of her and love her so much!
The Official Rare Disease Day 2015 Video